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WiggleIt

WiggleIt

Was prescribed low dosage TCAs for 2.5 years. Nortriptyline 20-30 mg from May 2012 - Dec 2013. Then desipramine from Jan 2014 - October 2014. In October, my neck and tongue started twitching. I'd been having muscle tremors since about May, but my stupid doctor couldn't ever tell me what it was. I finally looked at the side effects of the desipramine and put two and two together and quickly tapered down. I was told that was okay since I was on such low dose. Was actually told it would have been okay to abruptly stop since the dosage was low.

In hindsight, I now suspect that some muscle stuff I noticed on nortriptyline were actually side effects.

Now it looks like I have tardive dyskenisia, which is apparently rare from TCAs. Please, will I recover? Has anybody on here recovered from TCA-induced TD? I see that people have recovered from TD from other classes of meds. Looking for hope about my situation.

It is apparently so rare with TCAs that I can't find info and I want a full recovery.

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UnfoldingSky

UnfoldingSky

Hi WiggleIt, I responded to you over on the TD thread but wanted to say hello here as well. Glad you found the forum. From reading your signature it sounds like you've had a hellish time and much of what you write is common for withdrawal. I said on the other thread I have had many of the symptoms you list, most of them gone now or much improved. Do keep up the battle, it does get better even if it's downright scary right now.

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WiggleIt

WiggleIt

Hey tgirl, thanks for responding! People have already been so kind to me here and are keeping me hopeful.

Hi mammaP, I am having every withdrawal symptom and side effect listed, as if I were a checklist of worst case scenario. In hindsight, I started having movement problems ever since being put on the nortriptyline in 2012, but was not able to put the puzzle pieces together. It manifested as weak muscles. I just thought I needed to lift more weights or something. But it never worked. I never got stronger; I just got weaker.

On desipramine, stuff got worse. One leg started dragging and I started consistently needing a cane. No docs could tell me what was wrong. Just said that all my tests were normal and I had no nerve damage, so there was no reason for my leg to be dragging.

FINALLY I was the one who put the puzzle pieces together and noticed that what I was experiencing were side effects. I quickly tapered down, which I was told was fine since I was only on 30 mg of desipramine and low, infrequent use of lorazepam (Ativan).

Then, the movement problems started up with a vengeance about two weeks after being off the meds. Now, it has been a month and a half since I have been off and I am still having all the problems listed below in my signature. I WON'T let them put me back on and I won't let them give me anything else to try and control the symptoms. I have to fight to get better naturally, especially since seeing on this site how much damage docs have caused by trying to use more meds to "fix" people's symptoms.

I am just pissed that I stayed on these meds for 2.5 years that were hurting me. I WISH I had recognized the muscle weakness problems earlier because I would have quit the meds IMMEDIATELY. I hope that staying on them so long doesn't mean that the movement damage will stick. Everyone here says it will go away, so I am hopeful. I need to REMIND myself to stay hopeful, though. It's really easy to get stuck in the fear. UnfoldingSky has already done so much to lift my spirits.

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luv2knit

luv2knit

WiggleIt, I don't have the TD, but I have what I believe to be akathisia. I was on Zoloft for 20 years for Chronic Fatigue, and looking back on it, I believe I had akathisia off and on while still on the Zoloft. My withdrawal symptoms (including akathisia) did not start until I had been off for a month. I also did a much too fast taper. I know it is "early" in my recovery (4 1/2 months from my last dose), but I am impatient, and also looking for some hope. I think the fact that symptoms come and go, or at least get better at times is a good sign for me. Wishing you success in your recovery.

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UnfoldingSky

UnfoldingSky

Also, WI, a mild muscle weakness was probably the first sign I had been injured by Celexa. It happened well before I had any TD issues too.

However when you are having TD issues as someone somewhere pointed out if there is a lot of movement your muscles would naturally tire of it. So that part makes sense.

Still, I just don't get what happened to my muscles at the beginning, I recall losing about five pounds when the drug reactions started and it seemed it was from losing muscle mass. Wasn't hugely noticeable to others or anything but I wasn't able to put it back on with weights.

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WiggleIt

WiggleIt

Sometimes I feel like I have tremors or vibrations in my throat/neck and in my diaphragm. If I talk too much or too fast, the vibration happens deep down in my diaphragm and then I have trouble talking and have to gasp for breath. It scares me because it makes me feel physically like I can't breath and might die.

Does this get better? I've heard other people say it eventually gets better. It's just such a scary feeling to me. I'm a month and a half off meds, so I keep thinking the side effects/withdrawal effects have to end soon, and when a new symptom appears, I freak and get scared.

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UnfoldingSky

UnfoldingSky

Hi WI, just wanted to say I was thinking about you and hoping you were feeling a bit better. I saw your breathing-related thread, I am sorry to read that is going on.

Have you been for your appointment, have they given you any answers or solutions? It sounds like they said that what you have could be TD, did they discuss what current treatments are with you and if there is anything to help if they feel it is TD that maybe would help the breathing issue?

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WiggleIt

WiggleIt

Nobody is helping me at all. My primary care physician referred me to a neurologist who specializes in movement disorders. That neurologist can't see me until April.

The thing is nobody has said I have TD. Like, no doctor has actually said it. It has been my assumption based on my symptoms and research.

I did go see an Ear/Nose/Throat specialist and did a sleep apnea test and a swallow test. Both came up normal, but I get those weird vibrations/tremors that feel like they are right under my sternum and my breathing gets funky and it gets hard to talk, and I don't know who to turn to for help.

I don't know if I just keep living through this hell and wait to be one of the lucky ones for whom it goes away. I don't even know if it worth calling a doctor at this point.

My mom, dad, and uncle are taking care of me. They calm me down when I feel like I am going to die or stop breathing.

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WiggleIt

WiggleIt

UnfoldingSky, thank you for always following and checking in on me. It's scary being a newbie here. Not a lot of people seem to respond to stuff, so I get worried when I only hear one or two success stories, or one or two responses. It makes me think maybe there only ARE one or two success stories.

But that just CAN'T be all. There have to be more and I have to become one of them.

I do have some good news, though: my pelvic pain really has been staying low with physical therapy. It's not perfect, and I'm nowhere near normal, but don't you think if all the doctors and all the research that told me I was incurable have turned out to be wrong… don't you think it means I could get well from this also?

Is it just me who has lost fine motor control of her dominant (writing) hand?

Is it just me whose diaphragm pushes out all the air and gives me a hard time talking, and a hard time catching my breath?

Is it just me with the myoclonic jerks?

Is it just me with the (self-diagnosed) tardive dyskenisia?

Is it just me who can't go downstairs in her own house because there are so many things to look at that it gives me a headache and I start to cry and have to run back into my room where it is dark and quiet?

Is it just me with the twisted face and the protruded tongue, like a Chinese Crested pup?

Is it just me who cannot be left alone, not even for one minute?

Is it just me who gets scared that I am in such a small minority of severity that I fear I might be one of the rare cases who never recovers? IS IT JUST ME WHO WANTS TO BUCK THE ODDS WHEN THAT FEAR ENTERS MY MIND?

Is it just me who thought she was doing a slow taper according to doctor's orders, only to find out later that she was actually doing a cold turkey?

Is it just me who can't reinstate, partly from fear, and partly because it's impossible to know what to reinstate, and partly from paradoxical reactions, and partly because there is NO doctor here who has any knowledge of what is happening to me? I am an example in a textbook, a theory they've read, far too distant for them to ever think they would be faced with someone like me.

Or am I not using this site correctly? Is there a magic trick to finding the right place where a groundswell of responses come back to me and say, "YES. I had ALL of that and it is ALL recovered now"?

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Altostrata

Altostrata

I merged your topics. Only one to a customer in the Introductions section. Please put all your questions about your particular situation in this topic, along with notes about your progress. You can look back on this as a journal.

How did you go off the desipramine?

If you look in the Symptoms forum, you'll see quite a few topics discussing symptoms similar to yours. It can be difficult, please stay calm -- the body tends to heal itself over time.

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WiggleIt

WiggleIt

I have problems falling asleep and problems waking up. Tremors, internal thumps, tingles, terrors, gasping for breath as I am in the process of falling asleep, and as I am in the process of waking up.

Through very hard work and nighttime meditation, I have gotten slightly better sleep the past few days: a 2-3 hour batch of sleep, then wake up, then another 2-3 hours. But it has taken PRACTICE and consistency.

So, not a normal amount of sleep, but definitely sounds better than what some others are dealing with.

Thank you for responding with something positive. I so needed it tonight.

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WiggleIt

WiggleIt

Hi Altostrata!! I am SO happy to hear from a mod, especially as I have read some of your posts and you sound recovered, which gives me hope.

When you say to put all my entries under "this topic," can I please just clarify which topic we are under? We are under the "Symptoms" section right now, correct? I am still getting the feel for where everything is and sometimes forget to follow my own topics, so I have a hard time finding responses when i am notified via email.

I started desipramine in January 2014, titrating up 10 mg per week until I reached 60 mg. Stayed at 60 mg for a month, then down to 50 for a month, then 40 for two weeks, then 30 for a little over a month. Tried to go down to 20 for two weeks, but stuff went wrong. Had NO idea it was withdrawal at the time. In retrospect, every time I stepped down a dose, something went wrong, but I never knew what was happening. My doctors just said, "Oh, everybody with chronic pain has weird nervous system responses." They never put it together with the meds. They just said my nervous system was happening to do weird things at weird times.

Anyway, I ended up going back up to 30 mg desipramine and holding at 30 for three months. While I was holding on 30, I stepped down Ativan, from 3 times a week to twice a week, to once a week. Was told by my primary care doctor that I was doing it safely. While still on 30 mg desipramine and about two months after quitting Ativan, my throat muscles and tongue started visibly twitching. I did a SUPER fast taper down from the remaining desipramine. 20 mg for four days, 10 mg for two days. Docs reinstated 1 mg of Ativan per day to help with the desipramine taper, and to use for a few days after the taper. Two days after I was all done with desipramine, I had a paradoxical reaction to the Ativan, so NO more of that for me. Also had a paradoxical reaction to 1 mg Valium, so none of that, either.

Prior to desipramine, I was on low-dose nortriptyline until December 2013, when my idiot doctor also had me do a fast taper off of that and a fast titration ONTO desipramine. My conundrum is that who knows if I have been withdrawing from nortriptyline all year while I was on desipramine? Or was I withdrawing from desipramine during the year when I was stepping down each month by 10 mg? And what role has the Ativan been playing?

Unfortunately, the withdrawal effects of nortriptyline, and the side effects of being on desipramine, and the withdrawal effects of desipramine, and the withdrawal effects of Ativan are all the same, so there is no way to separate everything out for a clean way to reinstate. Honestly, I don't even know if I'd want to reinstate. I cannot face the possibility of inviting this hell twice if I reinstate and things go wrong.

Besides, there is no doctor that I have found who even knows enough to write a compounding script for a slow taper anyway. Trust me, I looked.

I am truly trying NOT to sound so negative… Please don't think me a Negative Nelly. I spent my whole life as a truly joyous person. I wish you had known me before.

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Wildflower0214

Wildflower0214

I have problems falling asleep and problems waking up. Tremors, internal thumps, tingles, terrors, gasping for breath as I am in the process of falling asleep, and as I am in the process of waking up.

Through very hard work and nighttime meditation, I have gotten slightly better sleep the past few days: a 2-3 hour batch of sleep, then wake up, then another 2-3 hours. But it has taken PRACTICE and consistency.

So, not a normal amount of sleep, but definitely sounds better than what some others are dealing with.

Thank you for responding with something positive. I so needed it tonight.

It's the most important thing, sleep! I'm in a sleepless night at the moment

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UnfoldingSky

UnfoldingSky

Nobody is helping me at all. My primary care physician referred me to a neurologist who specializes in movement disorders. That neurologist can't see me until April.

The thing is nobody has said I have TD. Like, no doctor has actually said it. It has been my assumption based on my symptoms and research.

I did go see an Ear/Nose/Throat specialist and did a sleep apnea test and a swallow test. Both came up normal, but I get those weird vibrations/tremors that feel like they are right under my sternum and my breathing gets funky and it gets hard to talk, and I don't know who to turn to for help.

I don't know if I just keep living through this hell and wait to be one of the lucky ones for whom it goes away. I don't even know if it worth calling a doctor at this point.

My mom, dad, and uncle are taking care of me. They calm me down when I feel like I am going to die or stop breathing.

I am so sorry you have to wait until April. I had to wait a long time to see someone too, but where I live this is the latest fad, making people wait...Didn't know it was like that in the US. It's awful that you are left to sort it out on your own in the meantime. I feel for you.

I am glad your family is helping you, mine are too. I found stress made my issues so much worse, so anything they can do to calm you down that is safe I would hope would help.

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UnfoldingSky

UnfoldingSky

UnfoldingSky, thank you for always following and checking in on me. It's scary being a newbie here. Not a lot of people seem to respond to stuff, so I get worried when I only hear one or two success stories, or one or two responses. It makes me think maybe there only ARE one or two success stories.

But that just CAN'T be all. There have to be more and I have to become one of them.

I do have some good news, though: my pelvic pain really has been staying low with physical therapy. It's not perfect, and I'm nowhere near normal, but don't you think if all the doctors and all the research that told me I was incurable have turned out to be wrong… don't you think it means I could get well from this also?

Hi WiggleIt, I know, it can be really scary when first you start sorting through this. You should know though, I have noticed on weekends it can get a bit slow here and with Christmas coming likely less people will be posting no matter the day. Also, there is another site devoted to AD use so some people may be going there. So responses here can at times be a bit slow, maybe compared to different forums on other topics. Don't get discouraged because of this.

In a minute I am going to go look for an old thread I recall where someone mentioned they had what I think was a serious case of TD. I believe their doctor was taking it seriously. Possibly they might have something to add, I recall it wasn't getting lots of hits. Wasn't that long ago so not sure what is going on with them now. It may take some time for you to connect with a number of people here, but that doesn't mean people aren't around. Remember, some people aren't likely to know if they have TD issues that that is what it was, doctors from what I have seen can sometimes be reluctant to admit that is what happened, and likely some never figure it out, it clears up and that is that. So their stories will be difficult to find.

I am so glad your pain is reducing with the physical therapy, that is really good to hear. And I believe you can recover, don't lose hope, please. Right now will be in a bit of a reactive phase as you sort out what happened and hopefully get some answers so it's natural to be discouraged. I was so discouraged when I first developed akathisia, for a long time I couldn't even find one success story or even one person to talk to who still had it. Then I found one person who had recovered from it but it was still ages before I found even one more. Now I realize way more people recover than I ever knew. So don't let the initial lack of recovery stories get to you. It can take some time and searching to find info like this and as I said many people likely are recovering never knowing what it was to start with.

Also, too, possibly some who had it from APs who were put on it for genuine psychosis may be reluctant to even post their own stories, as sometimes those people can get treated abysmally online (few exceptions being sites like this.) If they can't find us though they may never share what happened to them.

WiggleIt

Still so scared. There have been some improvements, but the waves are so scary and still happening SO often and still packed with SUCH bad symptoms that it's hard to feel improved. I had three and a half days where I didn't seem to twitch much, and then the twitching came back, and today I had a giant episode of whole body wiggling in public. It was so frightening and disappointing.

I think my chewing and swallowing is getting a little bit better, though. I can eat scrambled eggs now on most days, instead of having to have them completely whipped.

I wrote a new poem. It's solidly average, but I may try to submit it somewhere anyway.

Still so angry at the docs who misdiagnosed me and put me on meds, instead of sending me to physical therapy.

I hope to live a full life again someday, where I can chew and swallow food, where I can laugh and cry and let my mind wander without my whole body jerking when I think abstractly.

And I really want the chance to be a good daughter to my parents. I love them so and want to see joy on their faces again when they look at me, instead of tender sorrow.

I hope God does not wait until I am in Heaven to answer my prayers. I know I will be surrounded by love and peace in the Kingdom of Heaven, but I truly beg His mercy that He allows me to feel peace and health again in this terrestrial life.

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UnfoldingSky

UnfoldingSky

I am sorry it's still so hard for you even if you have seen some improvements. It still makes me so sad reading what happened to you, even just the little bits I know. Please don't get discouraged though. Just yesterday I was reading on another site about someone else's psych journey and they mentioned while on drugs they used to shake a lot and though they didn't really focus on this in the article it sounds like it did end for them.

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WiggleIt

WiggleIt

I posted this under the "tremors" topic in Symptoms, but since it is also a status update of where I am right now, which is HELL, I am going to post it here, too, so I can keep track. It is unbelievable how severely I seem to be manifesting compared to the other cases I read here:

"I went about three weeks without having an episode that I refer to as 'Big Wiggle.' Yesterday and today I had Big Wiggle episodes, which are always accompanied by severe speech impediment.

Big Wiggle is when my whole body flops uncontrollably and it looks like I am having a seizure, but I don't lose consciousness. Arms, legs everywhere. Sometimes I lay on the ground flopping like fish out of water, and sometimes it happens when I try to walk, so my parents must hold me so that I do not fall. I am conscious, though, and an EEG of my brain did not detect any seizure activity. But it does LOOK like I am having a seizure.

Anyway, I had many Big Wiggles during the first month off meds. Then they settled down a bit for about two or three weeks. Yesterday and today I had bad Big Wiggle episodes and the myoclonic jerks of my arms and legs are terrible, and when I talk out loud it is choppy with very simple words.

I am scared. I had improved a little bit so that I was able to walk five laps in my hallway. Now, I cannot walk five feet without my whole body twisting and writhing.

I haven't read of any cases as severe as mine on those whole site, nor anybody who has suffered from c/t or rapid taper of TCAs.

Certainly not reading any recovery stories of people manifesting as severely as me. Sure, there's some people recovering from less severe-sounding TD and less-severe sounding MS-like symptoms, but I haven't read anything anywhere else about anybody flailing uncontrollably on the ground. It is terrifying and I am sure I am going to die, or be stuck like this forever. As long as my Mom and Dad are alive to take care of me, I know I can be brave. But I am an only child, with no spouse or children.

If I am stuck with a whole body movement disorder and cognitive impairment, I'm fucked. There is no hospice that will be as kind or gentle with me as my parents are.

Today, I have not even been able to feed myself because my arms are jerking too much. My parents have been feeding me with straws and spooning soft foods up to my mouth. I am able to the this because it does not mater if my hands jerk while they hover above the keyboard, but if they jerk while i try to feed myself, then obviously food goes everywhere.

Seriously, though, NOBODY on this site seems as bad as I am and NOBODY on this site seems to have any experience with my class of meds. There are so many sweet people here who are so encouraging, and I was encouraged for a few days, too, but now I am just as bad as I was at the VERY beginning, when we were calling 911 all the time because I was flopping on the floor. The only difference now is that I know 911 is a waste of time.

So I just lay on the floor, flop, and whimper, 'Please, please' over and over again.

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Wildflower0214

Wildflower0214

I do know WestCoast had the flopping seizure like experience while she was on meds, and I think during WD.

There are also several of us who have had problems swallowing.

And although we may not share your symptoms, there are people here suffering immensely.

Also, Iggy had Parkinson's like shaking for a while, a long while I think. Luv2knit has akathisia and she trembles all over and has to pace because of how restless she is, unfortunately, akathisia is also accompanied by mental torment.

Iggy also had this for a very very long time.

I empathize. I have no one but my parents. And am unmarried with no children. I'm scared too. I'm so sorry sweetheart. But, I really do believe we will get better.

Prayers and (hugs) xox

PS: thinking we are the worst case ever is a symptom of WD. I have this thought often. Many many people do. Alto has seen a lot, maybe she could chime in and give you some encouragement since she has watched so many people go through WD over the years.

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WiggleIt

WiggleIt

Am I too late to reinstate after nine weeks off? I am a mess and NO doctors can help me.

I was on nortriptyline from May 2012- Dec 2013. Then fast taper off and switched to desipramine in Jan 2014. Then fast taper off desipramine in October 2014. My STUPID gynecologist and primary care doctor did this to me. I have been having terrible side effects all year on desipramine that have been getting worse. Now, there is no way to know whether I was withdrawing from nortriptyline while I was on desipramine. Or if I was withdrawing from nortriptyline PLUS getting side effects of desipramine.

I am a COMPLETE mess. Look at my signature for everything I'm going through. I'm afraid to reinstate at this point, ESPECIALLY since I can't find NAY doctor who knows ANYTHING or can help me take care of myself safely. I have called at least twenty doctors in the Denver metro area. NONE know anything about what's happening to me.

I might be too scared to reinstate anyway because, at this point, something could go wrong. Plus, my meds were switched SO irresponsibly that it's impossible to know which one to reinstate.

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WiggleIt

WiggleIt

I think I will try to find WestCoast. Maybe WC can let me know if it ended.

I wish I were better able to respond to you right now with some kind of encouraging words, like the ones you have just shared with me. Someday, I hope to be able to support you right back, like you have done with me just now.

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steeley

steeley

Yes, I had TD after my psychiatrist switched me from Mirtazapine to Lexepro. He said that it is rare with these drugs but CAN happen. It is very scary and yes, I thought I was going to die and that I would have it forever. So frightened.

My tongue was jutting out.

My lips were "smacking".

I was walking on tippy toes.

My legs behaved like a marrionette and I had difficulty swallowing.

My legs were weak, and felt I was going to fall over.

When I found this site and began to taper acording to the 10% rule things began to slowly improve. I find that when I make a drop in my taper symptoms return then slowly abate.

It is heaps better for me now, and now that I have stabilised on my current dose no longer have these symptoms.

I am still frightened in that when I eventually get down to zero, zip, no more AD's the symptoms might return, but I have to keep reminding myself that over time things have improved enormously and will continue to do so. I have to hold this hope and belief.

I know how scary it can be and feel for you so, but believe that as you taper slowly your symptoms will improve. I cannot promise this as am not experienced enough. All that I know is that I had it too and it's scary and terrifying, but for me it has gone away, to date. I pray it won't return and wish the same for you.

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UnfoldingSky

UnfoldingSky

The story I mentioned of the guy who recovered from severe TD sounds like your case from what I can recall. He was twitching all over the place, limbs thrashing about, pretty well all the time, then seventeen months in it just vanished. So it is still possible even with it being so bad at present for you that it will improve.

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WiggleIt

WiggleIt

Steeley, I guess I am worried bc I did a rapid taper and may be too far out to reinstate and stabilize. Plus, I am too scared to reinstate bc, OMG, what if I have to face this TWICE? What if I stabilize and then it happens again at a slow taper? I am so glad you are stable and will pray fiercely that it continues to go well for you.

US, thank you for sharing about that recovered guy! It always helps me to be reminded. I can never be reminded enough when it comes to a good story.

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mammaP

mammaP

Am I too late to reinstate after nine weeks off? I am a mess and NO doctors can help me.

I was on nortriptyline from May 2012- Dec 2013. Then fast taper off and switched to desipramine in Jan 2014. Then fast taper off desipramine in October 2014. My STUPID gynecologist and primary care doctor did this to me. I have been having terrible side effects all year on desipramine that have been getting worse. Now, there is no way to know whether I was withdrawing from nortriptyline while I was on desipramine. Or if I was withdrawing from nortriptyline PLUS getting side effects of desipramine.

I am a COMPLETE mess. Look at my signature for everything I'm going through. I'm afraid to reinstate at this point, ESPECIALLY since I can't find NAY doctor who knows ANYTHING or can help me take care of myself safely. I have called at least twenty doctors in the Denver metro area. NONE know anything about what's happening to me.

I might be too scared to reinstate anyway because, at this point, something could go wrong. Plus, my meds were switched SO irresponsibly that it's impossible to know which one to reinstate.

Please help.

Wiggleit, I moved the quoted post from Scully's thread to your own intro thread. Please post your questions here where we

will see them and respond. I'm sorry that you are suffering so badly, my heart goes out to you. You could try reinstatement

but we can't say whether it will help any as you have quit a benzo as well as the TC. Alto suggested 3 mgs of desipramine

on the 17 dec.

By this topic, I mean this, your Introductions topic. The one we're posting in. This is your own topic.

Please don't blame yourself. Almost every single person here took advice from a doctor, that turned out to be bad advice.

Sounds like one way or the other, your nervous system has been through the wringer. You may also be suffering benzo withdrawal, and the adverse reactions didn't help either.